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Postby laura.knight » Thu May 20, 2004 12:19 pm

Hi, I'm new to this site. I've recently found out that my dad has to go on dialyses after finding out that his 1 remaining kidney has been attacked by cancer once again. He will be on dialyses for a min of 2 yrs.
His main concern at the moment is the amount of liquid he can intake during the course of a day. He has been told not to exceed 500ml. This seems a ridiculously small amount.
He is mainly fed up that he will not be able to have a 'proper' drink again (not that he relied on it, just enjoyed it!) and seems to have the attitude he will no longer be able to enjoy social occasions, even popping to the pub with his mates will not be an option, as he will not even be able to have a soft drink.
I would appreciate it if anyone has any feedback on how they have addressed and coped with this although I realise there is no easy answer!
Thanks, Laura.
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Postby JMan » Thu May 20, 2004 1:05 pm

Hi Laura.. yes to someone with working kidney's 500ml does seem like a ridiculously small amount. It will probably seem even more so to your dad if he is used to downing a few pints with his mates as many normally do.

However kidneys balance your body's fluid (among other things) by producing urine. Once at the dialysis stage he will probably be producing little or no urine.

Fluid allowance is calculated thus.

Amount of urine passed in 24 hours + 500mls.

So Urine mls/24 hrs + 500mls.

500 mls is the amount you lose per day through defecation, perspiration and respiration (crapping, sweating and breathing to the rest of us:))

This explains the amount of 500 mls.

The REASON for keeping restricted fluids is that excess fluid cannot be removed by the kidneys as per normal, additional fluid has to be circulated by the body's pump (the heart) and this puts pressure on the heart. More than a couple of litres and blood pressure may be elevated, over prolonged periods damage occurs to the heart (it basically becomes stretched) and fluid can build up around the heart and lungs.

I CAN understand your dad's frustration though, as sitting in a pub with no drink is incredibly strange and makes you feel socially naked when everyone else has a drink.. It made university social life very hard for me indeed.

All I can suggest is that he explains it to his friends if possible (thinking of the heart as a boiler system with the pump under pressure with no pressure valve might be an apt analogy for pub talk!) and gets their support in not drinking.. 500mls is less than 1 pint so stick to 1 or 2 shorts AT MOST on celebratory occasions.

Day to day, drink from shot glasses.. they are about 40 - 60 mls.. Mini cans (150mls) ice cold from the freezer (about 1 hour max) are refreshing on dialysis.. The other benefits of keeping to fluid restrictions are that eventually you won't get so thirsty ( you only start to get thirsty if you are well over the fluid limit or badly dehydrated)

Cut down on salt and sugar (both make you thirsty) though he should check on both of these with a renal dietician and doc if he hasn't been advised on these things.

Coping with it is very much a state of mind thing.. From my experience he's probably feeling quite a bit of resentment and frustration that this restriction has been thrust upon him.. THere are 2 routes to go down.. one is denial (I'm OK and I'm gonna carry on drinking, and who cares anyway so there..) and the other is dealing with it and sticking to the fluid restriction so that he looks after himself in the best possible way (looking after number 1, as I'm no good to anyone in a box.)

This is of course all purely theoretical when written down, and easier to say than do and option 2 is the harder path when you aren't feeling so great about yourself anyway..

However if he can feel comfortable with himself and others whilst not drinking then it should be a little easier..

HTH just my 2p's worth
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
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Postby laura.knight » Thu May 20, 2004 1:21 pm

Thanks very much for your reply Jman, it's very useful. I'll pass on the info to my pa! Ps. Bloody well done on getting through Uni without a drink - at least you can probably remember a damn sight more than I can from my Uni years!
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Postby Sueleic » Thu May 20, 2004 5:15 pm

Hi Laura
I am sorry to hear about your dad yes it is very hard with fluid restrictions.
I just wanted to say you have had a wise young man answer your original post Jman
Jim well written!
But then again wouldn’t expect anything less from you as well as others on this board

Take care Laura and keep posting
In the UK

:) :)
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Postby Blaine » Thu May 20, 2004 5:41 pm

Hi Laura,

I can certainly sympathize with your father; I've been on dialysis for almost a year now. Once he starts dialysis, your father will find it much easier to follow the fluid restrictions then he now thinks he will . It also depends somewhat on what kind of dialysis he chooses. Hemo dialysis fluid restrictions are usually more restrictive then peritoneal dialysis restrictions.

I personally allow myself 4 - 8 ounces of beer on occassion. It goes a long ways towards scratching the itch. I also have come to love small ice cubes. I have some ice cube trays that make very nice baby cubes that are about 2 ml per, so I can chew on a lot of them without doing much damage. I have also learned to sip liquids with tiny sips - just enough to wet my mouth. This quickly became habit. Also, Jmans suggestion about drinking from shot glasses works nicely.

I strongly agree with Jman's comments about not feeling sorry for yourself. Being happy (or content) with life is mostly a state of mind, and adding dialysis to the mix doesn't change it a bit. My wife tells me I only get to whine once a day, so I musn't waste it on the same thing every day!

I hope this helps. Please keep us informed with how he is doing. There's a good bunch of people in here who are now or have been where he is at.

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Postby Rik » Fri May 21, 2004 8:25 am

My wife says I whine once a day too Blaine ... apparently from the time I wake up 'til the time I fall asleep!!!!!
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